January 28, 2011

Azer has only been stooling about twice a day now. Flagyl and Augmentin are over. He's not been coughing much at all. His appetite is sort of there one day, and gone the next, but he's not been refluxing nearly as much as when he was on 4 1/2 cans a day. I think it was just too much for him.

Off and on, he still has been vomiting right at the end of his night time feed. I just think it's weird that it's only after night feeds. We've slowed them down, sped them up, no change. It's strange and exhausting.

The jogging program has been going well. But we are still stuck on Week 1 of the plan. We can't seem to run for more than a minute at a time. So, we're just walking less in between running for a minute. The kids and I feel great and energized, and we look forward to the time spent together exercising. It's a great bonding experience. Happy kids = happy home!

January 24, 2011

Just where I wanted to be in the afternoon after school. And it was almost entirely my fault.

Usually after Azer exists his school, he comes running full speed at me, and hugs me, and then proceeds to drop his backpack and water bottle on me. Well, I was trying to squirt the remaining water in the bottle onto him. He ran laughing away from me. He turned around near the wall of the building, and just as I squirted water on him, he jerked his head back, and banged it into a pipe, sort of thing sticking out of the school. It gave him a good cut right on his eyebrow. No stitches, just glue. So ... at least once in his life, he had the opportunity to visit the ER for something that a normal kid would. We are going to stay away from brick walls with odd pipes sticking out of them now.

January 20, 2011

Yesterday, the docs decided to start him on Flagyl, which is an antibiotic that is supposed to treat bacteria overgrowth in the GI system, or that is as much of it as I understand. I think he's been on this before. Apparently being on Augmentin and Erythromycin, (both antibiotics), can cause problems in the intestines. So, here's hoping for normal stools.

He threw up again this morning, within minutes of waking up. I just don't understand what causes that. He's only had three doses of Flagyl so far, but there are no improvements in how the stool looks. Though he definitely has not been going as frequently as before. Appetite? ummm ...no. There is no appetite. He ate a pizza last night. Yeah, like the whole pizza! Except the pizza was one inch by one inch. And that was about it for dinner.

I am afraid of what the doctors will try next. I just can't help but feeling like we're messing things up worse every time we try something!

January 15, 2011

Yesterday evening, when I thought this was over for the day, the doctor called and asked me if I had given Azer any Prednisone yet. I hadn't. She said they saw a little bit of pneumonia in his lower right lobe, and that steriods might make an infection worse. She said if the antibiotics don't help with his cough, that we might be facing a future admission to the hospital. Wonderful hu....

So, I woke up at 1am last night to give him his erythromycin. Within minutes, he was throwing up again. Only, there was no formula coming out, just mucus. When his feed ended in the morning, there was no vomiting, and his morning stool looked ok, so I thought we were heading towards recovery.

I gave him his second dose of erythromycin before his morning bolus. About an hour later, he had diarrhea. Within a half an hour of that, he had sever abdominal pain and then threw up everywhere. Again, it didn't look like formula, just lots of mucus. Kind of panicking, I called the CF doctor on call. The plan is now to stop the erythromycin until Monday to apparently let his body get "adjusted". He's had a few more diarrhea episodes since then, but no more vomiting. As usual, he says he feels "fine".

January 14, 2011

Today was Azer's appointment with the GI CF specialist. The dieticians and the GI doctor felt that Azer would benefit from Erythromycin, which is an antibiotic but also works to to move things through the digestive system faster. http://www.medscape.com/viewarticle/448278 This is the goal, apparently. To move the formula and food through faster. Hopefully he will then be more hungry for food, and less full of formula. Unfortunately, I need to give this medication 4 times a day, and one of those doses is about halfway through his night feed. Yay for waking up in the middle of the night.

We are only doing one bolus feed in the morning. The GI doctor explained about how the stomach changes it's "position" when it is full of formula. So, this may be why he is having much more trouble with reflux now. They prescribed liquid Zantac in addition to the Nexium he is already on to try to make it more comfortable for him.

Don't get confused now. He's taking Zantac for reflux and Zyrtec for allergies. Being honest here ... I am never going to get those two straight.

He really has not gained any weight since December, so they said that if his weight doesn't improve, they may put him on a higher calorie formula next month.

His FEV1 in December was 90%, and today the best he could blow was 70%. Yikes. But, they weren't too concerned seeing that it is cold outside, and he has been off of his Flovent for a while now. So, they also prescribed an oral steriod to kind of "hold the tide over" until we get the Flovent, which should be next week. He will also be taking Augmentin (general antibiotic) for 14 days.

After the doctor visit, we went downstairs for X-rays and labs. He cried a tiny bit when the lady stuck him. :(

And here he is demonstrating how he stands for an X-ray. He is holding his breath, which is what they normally do for a pulmonary image.

After spending 5 hours at the hospital, we are all spent and exhausted. I am still working through wrapping my head around ALL of these medications.

January 13, 2011

He threw up again this morning. It was some of his feed, exactly when his feed ended this morning. I ran it pretty slow. It ran over a period of 10 hours. And still ...

He didn't get his afternoon bolus yesterday because it was straight to the pediatrician. So, he definitely wasn't too full.

The pediatrician was a waste of time, but I knew that. It was mostly to check his weight. Which pretty much is the same since last month. That is very frustrating, with all these extra bolus feeds during the day. Maybe he's not gaining because he's hardly eating any food. Who knows. I sure hope the GI doctor tomorrow has some answers.

January 12, 2011

He threw up at the end of his feed last night again. Again, it appears to be reflux. He kept trying to swallow hard to keep it down but just couldn't hold it. He kept his morning bolus down, but I've been stressing about it all day.
I made an appointment after school for the pediatrician just for peace of mind. While driving there, I got a call back from the CF clinic. They want him to see the CF GI doctor Friday morning.
Well, I just continued driving to the pediatricians office. I was almost there anyway. His weight is 50 lbs. Same as last month. So not cool.
While lifting his jacket off, the nurse was all, "oh, I didn't know he had a button. He still uses that? I can't believe he still uses that". I guess she assumed he had one as a baby. As if I felt like explaining to her why he has a g-tube.
So, we'll see what the pediatrician says. I feel bad for taking Azer's afternoon away from him just to sit in yet another doctor's office.
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Visit Azer's CF Websitehttp://www.azerscfwebsite.com

January 8, 2011

For the past few months, we have been religiously walking. After Christmas, we started to add a little bit of running in it. Today was the first day we started an actual plan. I thought it would help his PFT's and maybe help clear his lungs.

So, today was day one of the actual plan we got from Ronnie's site. Thanks Ronnie :)

We were following week 2 of the plan, but could not run for 2 minutes straight the last 3 times around. One thing I just don't get his why he coughs so hard after running for a consistent minute. I hear mucus coming up, and he tells me he can feel it moving around. But, it's almost like the air irritates his lungs, because it seems like he just can't stop coughing. I recorded a little bit of it at the end. We did an Albuterol at the end, but he still coughed for about 15 minutes longer. I'm hoping when we get the Flovent next week, it will help ease the irritation, if that's what causes this.

Otherwise, he seemed to feel normal when we were finished.

I slowed his feed down last night to help with the reflux. He never eats that much on the weekends because we wake up late-ish. As in, between 7-8am. Someone asked me yesterday what I had planned for the weekend. Funny. It feels like there is just not enough time in the day for meals + bolus feeds. It's a can of formula for breakfast and he's too full to eat anything. At lunch time, he tries to eat a few bites of food, and then a couple hours later, it's another half a can of formula. Then in another two hours it's dinner time, and then it's time for nighttime feeding. I feel like all I'm doing is injecting stuff into this kid's stomach all the time.

Well, time to stop typing ... time for night time feeding and breathing treatments! Yay! I get to watch Spongebob for a whole hour....

January 7, 2011

Well, last night, the bag of formula for his night feed got a clog in it somewhere, somehow. All I know is, I just couldn't get it to run anymore past 10pm. So I brought in a new bag, and filled it with new formula. It had already been running at least one hour, so he got a little extra formula, but not that much.

Usually his night feeds run until about 3-4am. Because of the clog problem, his feed finished at 6am, which is the usual time we wake up for school. He sat up, and told me he could feel the liquid in his stomach coming up, higher and higher. He took his enzymes and morning medications with water, and he kept drinking water, because usually it helps keep the stuff in his stomach from coming all the way up. It didn't work this morning. I'm not sure how much of his feed he lost, but luckily he was able to get it in all in a trash can, so there were no messes. Yay...

So, I waited an hour, and just before we left for school, I gave him his bolus feed. He was keeping it down fine. While I was pushing the formula through, I noticed his Mic-key button looked loose. From time to time I check to see if the balloon is missing water. So, I laid him down on the floor, and checked, and there was very little water in the balloon. It's a wonder it didn't leak around the stoma. Well, that button is still the original button they put in when he had his G-tube surgery in June. So, I figured it was best to just change it.

So, I told him I'm going to put in a new one. We have discussed it before, so he knew how it was going to be done. I walked out of the room to go get the kit that includes a new button and gauze. When I came back, he was all in tears. He was afraid it was going to be very painful. I was afraid I wasn't going to do it right, but I tried not to show it. So, I made sure all the water was out of the balloon, grabbed a towel and pulled and it slid out very easily. I think it came out so easy because there was a bunch of mucus around it. I was kind of fascinated at Azer's "breakfast" bubbling out of the stoma. It's kinda cool in a gross way. The new button slid in just as easily, and I inflated the balloon, and flushed it with water to make sure it was in properly.

Azer was said it didn't actually hurt, that it just felt weird. I can't even imagine how that feels. The whole process took less than a minute and we were out the door. Around lunch time, his teacher told me he was showing it off, going, "Look, I got a new one!"

Back to the reflux. He is keeping water with him all day for today. I wish he didn't have to suffer like that. It's bad enough to feel it constantly shooting up, but it's just no fun to throw up.

Oh ... this is the old button. A brand new button is all clear, so I'm guessing the stomach contents change the color of it over time.

And here it is with the balloon inflated. It still inflates, I think it might have had a slow leak.

January 4, 2011

Well, since school started again, he's been eating a small amount during lunch. At least there is some food going in. And for the past few nights, he's been eating a "normal" dinner. Please note though, that a normal dinner for him is baby sized. Some days it could be several slices of pizza, and other days, literally 4 or 5 bites of food. Thus the need for bolus feedings. I've worked him up to 3/4 of a can in the morning, and 1/2 a can in the afternoon right after school.

In November, when he was having all that congestion that would not go away, the doctor had prescribed Hypertonic saline and Flovent (an inhaler steriod). It cleared his congestion up within a week. I always wondered which medication fixed it, or if it was both of them. Well, it was the Flovent for sure. I know that because I goofed up. The prescription was supposed to be 1 puff, twice a day. Since it wasn't written down somewhere where I could re-read it, I thought it was 2 puffs, twice a day. There were no harmful effects from the double dose, but ... when I called the pharmacy to refill it, it was a month too early. That one inhaler is supposed to last 60 days, not 30. Terrific, right? Since his Flovent ran out, his cough has returned with a vengeance. I think it's the cold, dry air that might be triggering his cough, because when we go outdoors to exercise, he coughs so badly, he can barely even talk.

The doctors seem to have samples of everything else except for Flovent. I can't reorder until next week, so we have been hanging on, thanks to my mistake. We've been doing so much Albuterol in this house, even the cat has wide, open lungs.

We are TRYING to do some jogging everyday to keep his lungs healthy. I've been reading some studies that say that CF people who do aerobic exercises regularly have higher FEV1 results, and lower rate of mortality.

January 1, 2011

Well, since I started the new bolus feeding (one and a half cans during the day time), he began to eat next to nothing. For a few days, he literally had nothing by mouth. Not even a glass of water. Everything was going into the tube. So, to ease my mind, I called the docs Thursday. The plan is to give a half can in the morning, and a half can in the afternoon. So, I tried that yesterday, and he actually had a few bites during dinner and a glass of milk. So, I'm hoping we can find middle ground, where he gets enough formula to gain weight, but not to the point where he can't enjoy any food.

Who knew it could be so complicated to gain weight? G-tube does not equal simplicity!